What is so wrong with discussing end of life care?

[imintrouble]

I'm not proposing rationing or coercion. I don't want to make decisions for pts or families. What I DO want is someone objective, to honestly and compassionately provide hard truths about what death and dying looks like.

Doctors, for the most part, are not objective. Some I work with want to keep the pt alive as long as possible because it means a paying customer. End of life is when most of the health care dollars are spent, and that's where MDs and hospitals make the most money.

Death panel? Call it what you want, but our society is sorely lacking in honest accepting discourse about death.

Some people want to live forever and will submit themselves to any test, drug or procedure for that end. I respect that decision.

Some people want to live as long as possible, with quality of life determining how much intervention they want.

Shouldn't these people be given hard, basic information to guide them in these decisions?

[sevensonnets]

My mother is nearly 90 but is healthy, active and lives on her own. She is absolutely convinced as are many older people that when Obamacare (her word not mine) comes to fruition health care for the elderly will be rationed.

[Angelfire3]

It can't be any more "rationed" than what it already is now. I've read a lot of posts talking about the new healthcare bill & health care. What does it have to do with doctors talking about death to patients?

I'm glad we have this health care bill. I have a preexisting condition and so does my twins. I'm relieved that we don't have to worry about being denied or have to wait a year (like we were/did a few years ago) b/c of our condition.

[cherrybreeze, ADN, RN]

What a timely topic for me.

While I have seen all of what has been described here (the push to continue life regardless of the circumstances), this one went the other way (in terms of the doctor discussions, anyway).

My aunt (who is also my godmother) just officially went on hospice today, and was taken off the ventilator. She is 62, and was admitted to the hospital about 2 1/2 weeks ago. Likely, she was ill for quite some time, but we did not know until she was admitted. Her friend and neighbor forced her to go in, when he made his daily visit in the morning, as she was very SOB and gray.

To just be honest (no sense in sugar-coating), she has been a long-time alcoholic and smoker. Her health COULDN'T have been good for years, even if she wasn't being actively treated for anything. It would have been hard to know, maybe even for HER to know, because of her drinking. Much of the family has not been as close to her in recent years because of that, either (it's just hard to keep up a relationship with someone for which alcohol comes first).

Anyway, she went in to the hospital in respiratory failure, and was tx'd to the ICU the next day in DT's. We knew she had some kidney failure also. That was a Saturday. The next Monday, my cousin called me to ask if he should give permission for them to do a TEE; I told him yes. They found a large abscess in her heart, and damage to three valves and valve stems. Grim picture, even at THAT point (I was there when they did it, and the cardiologist let me stay in the room...you know when they make "that" noise and "that" face over and over, that they're not seeing anything good). She was already on several antibiotics, for a UTI and were ruling out influenza or pneumonia. Blood cultures had been negative, so they hadn't suspected the endocarditis.

During the family conference that followed, the doctors were all very straightforward on the gravity of the situation, and the likelihood that in the long run, she would not survive it. They would not do any kind of surgery there, should they manage to control the infection, because of the extent of the damage. They did not think a tertiary facility would accept her for surgery, either, given the odds, but couldn't say that for sure (at any rate, she needed to be more stable before it could have ever been an option). My *professional* opinion, for what it's worth, anyway, was that surgery wasn't going to be an option, either, at any point, and that if they attempted it, I figured she wouldn't make it off the table....she just had too many odds stacked against her (the renal insufficiency, resp failure, severe COPD and pneumo ~from CVL insertion~ and malnutrition, to name a few). My cousin, however, was (and still is, I think) CONVINCED that they weren't doing "more" because she does not have health insurance. All along he felt that they were "pushing" to have the vent taken off, rather than the other way around. I could not have convinced him otherwise.

The one thing I did, though, was tell him that her code status needed to be addressed immediately. That CPR would only blow the damaged valves, or if it was that one of the valves went, CPR was not going to fix it. He did agree to the NO CODE.

He then, however, did some "research" on the internet, claiming to not have known what "NO CODE" truly meant, and he presented the pulmonologist with the info he found on "partial code." He still doesn't like the pulm to this day, because he said he got very aggressive during that convo (as did I, when I heard the words PARTIAL CODE). I tried to tell him that we don't DO partial codes anymore, and that giving meds but not compressions, say, is worthless! I think he was ticked at me for not telling him about that "option" out of the gate (can't imagine why I didn't). All her kids could say for sure was that she had always said she didn't want to be kept alive on machines....that's what was happening at the time, though. They were hoping for a miracle, I know that. They felt, though, that taking off the vent would be "killing" her. I can understand that feeling, but there's a BIG difference between doing something "to" someone, and doing something "for" someone (as I know we here all know).

A week later, she had a trach and PEG done to replace the ETT and NG. I was a little leery about that, but NOW I am very glad they went that route....she was SO much more alert and comfortable, and was able to communicate afterwards (and was also through the DT's, which helped, meaning she didn't have the Ativan gtt any more).

A repeat TEE showed worsening infection and damage.

Fast forward a few more days, and her kidneys start shutting down rapidly. Her hands and feet are cold and purple.

Through that, though, until today, she has been alert. She has been able to visit with her family that she's fallen out of touch with, bury hatchets, and mend fences. Her joy in doing that was clear.

And all along the way, the doctors had long, detailed, and frank discussions with her and us about her condition, and her options. On Sunday, when I was there, the doctor had told her what the renal and circulatory failure all meant. I was then, able to ask her how she felt about it, etc. I washed her hair, as I had promised during the week before (which was the first thing she asked me about, when I got there!), and sit and talk about both important things and useless things. :heartbeat That visit is what I will take with me from all of this; it was her "old self," and the one I had missed from years ago, the one I will grieve for.

The next day (yesterday), she decided on hospice care and decided to have the vent removed today. The fact that SHE was able to be alert enough to decide it was rare, and wonderful. She was scared, but accepting, I truly believe. There was a short period of time today, even before the vent was off, that her breathing was more labored and she complained of pain for the first time since she'd been there. She was also more sad this morning, and watching the clock. I know she didn't know what to expect, and that was the hardest part. Most people, I think, when a decision is made like that, aren't aware enough to be the ones to make it. I can't imagine knowing it's coming, and soon, and just waiting for it. That part breaks my heart, but if everything DID have to go this way, I'm glad for many of the things that have been blessings along the way.

She was moved from the ICU to a private room tonight. When I left there, she was no longer alert. I can only hope she is at peace, and remains so for the rest of the journey, both what happens here and what happens beyond.

Sorry for such a long-winded post. This whole situation, though, has been a good example of the doctors being very open and honest about the options, and her expected outcomes from those options. While I know the reactions of my cousins (her kids) was a common one, I hope that I was able to help them understand some of it along the way, too, and that they do realize that everything that could be done, had been done. I'm glad she didn't undergo any unnecessary procedures or treatments just to prolong the inevitable.

Thanks for listening and reading, too, if you got this far. :) Guess I needed to talk a little bit, myself.

[sunnycalifRN]

Cherrybreeze,

what a great post! It addresses so many issues . . . it's wonderful that she was able to talk with all of you, and that she was "her old self", that so often does not happen. That she was able to make the decision to choose hospice care is also great . . . so often I've seen the family feuding about what the patient would want. Thank you.

[noctanol]

half of the people posting, show up to work day after day and are paid with the same money they are declaring the doctors and hospitals are out to get. it is the descision of the family or pt to make on what their care should be.

[Spidey's mom, ADN, BSN, RN]

cherrybreeze - thank you for posting. I checked out this thread right before I was headed to bed and now I'll remember you and your Aunt in my prayers.

This was tough - you did good.

steph

[ShayRN]

First of all, I want to say that I don't think the doctors do everything because of Medicare. I think they do everything because they are afraid to get sued. AND if they DO get sued they can say, well, look, I did everything....

Secondly, I think it is time we had frank talk about healthcare rationing. I don't mean set guidelines of age limits, but honest dialog about what is appropriate use of healthcare money. I will never forget (and probably have mentioned it before) when working on a cardiac step down unit the 50 some year old bilateral above the knee amputation, brittle diabetic who had open heart. I had to call and clarify an order from her cardiac surgeon "Ambulate in hallways tid." Ummm, can't do it doc, why not? Oh, because she has no legs and hasn't been out of bed in 5 years!!!! Do you REALLY think this is the best use of state funds? How about the 92 year old who had open heart and "SURPRISE" coded the next day on my unit. I felt every bone in his chest break like chicken bones when I was doing compressions. Seriously, I think that rationing is not only the right thing to do, I think it is the ethical thing to do. Doctors should not have to bow to pressure from families (how many of us have heard "well if they won't do it I will just call my lawyer?)

I just had a woman tell me I was practicing "barbaric medicin from the 1500's" when I explained to her that we would not be continuing her mom's 3 IV antibiodics she had been on for 2 weeks. Her mom was 98 years old with 3 stage 3 decubs on her butt. IV antibiodics had no effect at the hospital, but apparently at our inpatient facility we were going to wave our magic wands and they would now work....

The fact of the matter is this...What people really want is for us to make their loved ones whole again. When there is a trauma, this is possible. When someone is in their 80's and 90's I truely don't believe it is. OFCOURSE there are some 80 year olds out there that can have open heart and go to rehab and do well. But for every one like that I can give you 10 stories that didn't go as well. Where do we draw the line? I am not saying the government should dictate who lives and who dies, what I am saying is that I am trusting them to use my tax dollars wisely.

[sunnycalifRN]

*clip*

The fact of the matter is this...What people really want is for us to make their loved ones whole again. When there is a trauma, this is possible. When someone is in their 80's and 90's I truely don't believe it is. OFCOURSE there are some 80 year olds out there that can have open heart and go to rehab and do well. But for every one like that I can give you 10 stories that didn't go as well. Where do we draw the line? I am not saying the government should dictate who lives and who dies, what I am saying is that I am trusting them to use my tax dollars wisely.

Nice post. Unfortunately, there is so much emotion, hysterics, name-calling and finger-pointing, that I hold out no hope that we will make any headway on this issue. Just look at what's going on in Washington these days. As an ICU RN, I see the type of cases you mentioned, WAY too often . . . the family will want everything possible done for their loved one, so, he or she ends up trached, vent-dependent, on dialysis or CVVHD, tube-fed, and unresponsive . . . and 90 days and 3 codes later, dies. The American way of death!!

Doesn't have to be this way. A relative recently spent his last weeks of life in our hospice unit . . . I went up to visit him when I could . . . conversant, free of pain, reminiscing with his family until the final few days. That's the end of life I would wish for and for my loved ones. (yes, it is specified in my Advance Directive and POST)

[Esme12, ASN, BSN, RN]

I agree, but the pts doctor is usually the worst one to have the end of life talk. For financial reasons? I don't know, but it's the rare MD who will say, "there's nothing more we can do".

I don't think it's financial......It's ego!

[Esme12, ASN, BSN, RN]

You've got it right!! The cynics who coined the term "death panel" ( Tea Party/Sarah Palin/Glenn Beck et al) were only trying to create hysteria and panic as they lobbied against health care reform.

I just think the government needs to say out........I look at many government run entities ......I am NOT impressed! If they really worked for me......I'd be having a massive firing!

I thimk the term death panels liken more to WWII and Hitler......hence the extreme unease.

[mediajunkie650]

If you want to know who is spreading the lies about death panels and rationing, read the link and watch the video.

Right-Wing Media Kick Off 2011 By Dusting Off "Death Panel" Lie

7PrLirZL_dM

[cherrybreeze, ADN, RN]

Thank you for the prayers, Steph.

My aunt passed away this morning. She only had the one short period of time yesterday that she complained of pain, and was having some struggle to breathe (even on the vent still), and that's when they started the meds. She was peaceful from that point. Around four or so, she started to have some apnea, and passed around 7.

The fact that she's gone actually hit me much harder than I expected; maybe it's because I could at least distance myself some by focusing on the facts, medically......I don't have that, now. It is good to know, though, that she was both aware and decided that it was time to stop trying. I hope her journey was peaceful and her arrival with God joyful.